Skip to content
Listen

Shriver Center researchers lead discussions on priorities for developing statewide integrated autism database

Researchers at UMass Medical School’s Eunice Kennedy Shriver Center will present state officials this spring with recommendations and priorities for developing an integrated autism database in Massachusetts, based on discussions from a Citizens Jury they led.

Autism text

“If we have better data on how many people have autism, the services they need and may be accessing, it’s easier to make arguments for funding services or other supports,” said Alexandra Bonardi, MHA, OTR/L, project lead and clinical assistant professor in UMass Medical School’s Family Medicine and Community Health. “And if we know how many people are being diagnosed with autism every year, schools can be better prepared for students on the autism spectrum.”

Another possible advantage to a statewide integrated autism database could be the identification of particular areas with higher rates of autism, and to begin to study the reasons for this.

The 19-member Citizens Jury included about 10 individuals on the autism spectrum, a half-dozen parents of individuals with autism, and researchers. The group met for two days in September, then had a two-week online discussion followed by another one-day meeting in October. The comments and questions are being compiled and condensed into recommendations for state officials. Citizen’s Juries are one of several deliberative methods that are being studied by the Agency for Health Research and Quality (AHRQ) as a means to improve health care decision-making by involving members of the public.

Concerns raised through the Citizens Jury include who should be making decisions for people on the autism spectrum,   whether individuals should have the ability to opt out of data collection, and whether researchers should have access to the data.  Some feared the database could be used against individuals on the autism spectrum.

The Shriver Center partnered with the Jefferson Center in Minnesota, which specializes in Citizens Juries, and the New England chapter of the Autistic Self Advocacy Network (ASAN), which is a national group for and run by individuals with autism, on the project.

This initiative was sparked by the Massachusetts Autism Commission in 2013 that recommended steps Massachusetts should take to improve the lives of those on the autism spectrum. It recommended that state agencies work together to create an autism database to better understand the services needed by the population.

The Shriver Center researchers saw the state moving toward the creation of the database and Bonardi applied for federal funding, in collaboration with ASAN, for a Citizens Jury to recommend principles for compiling the database.

“The group was brought together to make the database the most advantageous and beneficial to the stakeholders,” Bonardi said.

Some states have set up registries of children who have been diagnosed with autism. In New Jersey, which has one of the highest rates of autism in the nation, licensed health care providers are required to enter any child diagnosed with autism into the Autism Registry database.  The registry is used for referrals for care coordination.

“There are registries for people with autism in other states and it’s concerning when a state barrels ahead and sets up a registry for people with autism without input from the stakeholders,” Bonardi said.

In addition to the recommendations to be presented to state officials, the group is creating a video of the Citizens Jury discussions and plans to create a wiki web page to share information about data collection.

The two-year project is funded by the U.S. Department of Health & Human Services’ Agency for Healthcare Research and Quality.

“The project will include outreach to assess whether sharing recommendations from the Citizens Jury changed the perceptions of state legislators,” Bonardi said.

kanna cbd oil where can i get hemp oil cbd hemp oil 300 mg does cbd oil interact with coumadin what is cannabis oil made of nuleaf cbd oil cbd oil and autoimmune disease cbd oil and drug test forum can cbd oil rso cbd oil google cbd oil flower cbd oil colorado grown cbd oil cbd oil brands capsules house of hemp cbd oil cbd oil at bluebird botanicals hemp oil softgels cbd oil fraud bluegrass hemp oil genesis blend how much does cbd oil cost in georgia what are the best selling cbd oil products thc free cbd oil nature ranger cbd oil cbd oil for dementia and alzheimers cbd oil lupus 2021 cbd oil canabas only zonegran and cbd oil is 25 mg cbd oil alot can doctors use cbd oil cbd oil with some thc cbd oil capsules how long cbd oil from colorado azithromycin can i take cbd oil with it cbd oil for pain without thc therapiutic essential cbd oil cannabidiol anxiety cbd oil candy 1000mg infused cannabis oil can you take cbd oil with ginger cbd oil 4 pack organic green cbd oil offer dicount low income can you buy cbd oil in texas cbd oil on pain can u get popcorn lungs from vaping cbd oil can stopping cbd oil make you naseous cbd oil lab hiring effecrs cbd oil on drug screen how does hemp oil help does cbd oil the liver prednisone how to read cbd oil mgs what is the best cbd oil for weight loss veterinary cbd oil pharma canna cbd oil cbd oil salve organis cbd oil best place to get it green gorilla cbd oil review for anxiety

sex enhancer pill how to cure mental erectile dysfunction cialis information foods that can increase libido in men first time use of viagra low libido natural treatment does viagra work after prostate surgery doctor created penis pills best sexual health supplements proven penis enlargement techniques cialis pill cost natural sexual stimulant does progesterone increase sex drive what is levitra used for male libido foods does dht increase testosterone which is the most commonly used sexual organ cialis interactions how penis enlargement surgery works sex with ladies united states viagra can you take viagra and cialis at the same time rock hard pills side effects red male enhancement pill extra penis enlargement epic male pills penis enlargement tablets family guy quagmire penis pills mike mahler testosterone booster charge male enhancement pills are testosterone pills legal testosterone booster supplements reviews ht testosterone pills non prescription cialis alternative prodogy male enhancement pills erectile dysfunction drugs stendra male enhancement pills myths homeopathic libido booster male enhancement pill identifier male taking breast enhancement pills 5 star penis enlargement pills herbal testosterone booster are penis enlargement pills actually real cialis brand name natural penis hard pills is watermelon like viagra penis enlarge pills increase size drivemax forest ms penis shrinking pills literotica marathon man male enhancement pills good pills for your penis the vitamin shoppe male enhancement whats to young to take testosterone pills zinc supplements increase testosterone holmberg testosterone pills all sex pills

chaz bono weight loss stomach wrapping weight loss fast to lose weight slim seduction weight loss pills quick weight loss centers diet lose weight after depo lose weight with yoga tricks to lose weight fast best colon cleanse for weight loss weight loss ads philadelphia weight loss keto diet for fibromyalgia extreme weight loss meredith 35 pound weight loss no carbs for a month weight loss getting off the keto diet emma stone weight loss cheap diet pills that work vicks vaporub weight loss before and after best weight loss food for cats chandler weight loss season 6 7 best heart rate to lose weight will running help me lose weight teen diet pills diet suppressant pills best weight loss program keto diet bread substitute best over the counter weight loss pills can doctors prescribe weight loss pills diet pills with dmaa food list keto diet buying diet pills talla baja diet pills redotex acai berry weight lose 30 plus diet pills keto diet advantages diet pills that suppress hunger who should avoid keto diet what over the counter diet pills really work sexy weight loss victoza diet pills lose weight in three days breastfeeding on keto diet keto diet pronunciation can the keto diet cause depression exhilarate diet pills total fit keto diet reviews how much do you eat on a keto diet effect of keto diet on liver free trial offer on diet pills amazon books keto diet evo lean diet pills weight loss pill success stories can you eat eggs on a keto diet fda approved keto pills teenage diets to lose weight